Whew, that was a long dance.


I’m taking a tiny break from dancing around town to check in here. I love that my power chair is fixed, but I think I need a new battery. It isn’t holding a charge very long.

This week I am supposed to be wonderfully “surprised” by some kids at my kids school who will sing my lyrics for the 12 days of Christmas. I can hardly wait. I’ll try to video and post it.

In other news, do you believe in love? I’ve been thinking a lot about that question lately. I know most of you people don’t actually read or respond to my blog. I scared all the good commenters away. So sad. Anyway, question is valid and if you care to share some insight, please reply in the comments. Thanks.

Grounded


I’m dangerously depressed.

It’s a pretty day outside, November miracle weather. I should be dancing around town in my power-chair, but I cant. Last time I was out and about something happened with the joystick on my chair, making it immobile. I have a manual transport chair that I am using, but…

Close your eyes. Now damn it! Oh, I forgot you needed them to read. Okay, don’t close your eyes but try to imagine flying around your town. Not in an airplane, you are half human, half machine. You enjoy using your arms as wings, and dancing while you fly. Always dancing. You dance everywhere you go because it feels so good to fly that you can’t help but dance.

Suddenly something snaps in your wing arms and you can’t fly or dance around town, or even get the basic errands you were planning on doing done. You are nothing more than a hurting, broken, flightless cyborg.

That’s me. Dependent on my mechanical body parts, which can break down at any moment. They said it could be as early as tomorrow, but probably next week when the technicians will be able to take a look at it. So I’m sad.

Thinking 12 years might be too long. That’s the plan, sky-diving to my death 12 years from now. I’ll really fly that day, so I guess I do have something to look forward to.

Ok, ill suck it up and put on a happy face and be a good little cyborg now. Thanks for the vent space.

Those boys in blue just won’t leave me alone.


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I got pulled over in my wheelchair again the other day. Nice cop. Very concerned. I was on the wrong side of the street, and he also suggested me changing the steady tone of my rear light to one of the flashing ones so I’m even more noticeable.

Of course I complied! As if I wouldn’t…

They all just want the crazy pothead wheelchair chick to be safe. It’s good. I like them looking out for me, cause soon I will be viral and need some extra protection. I think I know which officer I can talk into street dancing with me if I run into him again. Not literally run into him. I’m not insane, besides, he needs to be able to dance.

There are some other self-defense things in the works which should be interesting if nothing else.

I’m starting to create momentum in my town for all my pipe dreams. One day the world will notice and hopefully lives will be changed in a really good way.

The worst thing that could happen would be I make a few people smile, and if that’s all that ever happens, it’s good enough for me. On that note, enjoy your weekend.

My Disney Caracter


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Disney finally made the me into a character. Well, me minus the chair. I am Maleficent. It’s perfect. The whole story. Evil and good and desperate to fly. Until that movie I had always felt Belle represented my personality best. Strong, loves books, interested in life a little less ordinary than the one the world wants for her.

So who are you in Disney worlds?

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Life’s Final Chapter


This poem is for two people I care a lot about, from both sides of this issue. When you love someone, you set them free.

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What is it that you find so hard to understand?

I explained it well, what I have planned.

I know that you love me and I love you too;

This is something that I’m just getting ready to do.

I’ve laughed, I’ve loved, I’ve shed some tears.

I’ve satisfied my doubts. I’ve conquered my fears.

You still have lots of living to do.

Don’t blame yourself that my time will be through.

It doesn’t have to be a bad thing. It’s no tragic loss.

The road will be over and I can put down my cross.

I desperately want rest, and lasting relief.

Why does that have to mean heartache and grief?

I’m not angry, I’m not even sad.

I value each second of life that I’ve had.

I know there is so much that I could still live for.

Each day holds promise, a new opened door;

I could continue this life; continue to try

To find some reason why I should not die.

I’m so tired of searching for reasons to live.

A knowledge of my death is a gift that I give.

I’m telling you now, so it will be easier on you

To celebrate my life, when my death is through.

It all could be over this very night.

With a few tiny pills I could put out my light.

But I don’t want you to be left asking why

You choose to live and I chose to die.

I want you to be a part of my life till I’m gone.

Please be a great part of this farewell song.

I’m thinking I still have ten to twelve years.

That should be plenty of time to dry all your tears.

At that point, there is nothing you should say.

I’ll die with dignity. Hopefully in a humane way.

Even our pets can be comfortably let go.

But for some reason our deaths must be painfully slow.

Perhaps tomorrow I’ll be hit by a car.

It could happen in town or when traveling far.

But if I survive till I’m ready to go,

Please don’t force it to be painful and slow.

Let me have fun. Let me be me,

And when that time comes, celebrate,

I’ll be free.

The Spoon Theory: Best Explanation EVER! (IMHO)


Brilliant.

The Musings of a Digital Vagabond

Arty spoon

Okay, so posting this might get me into some trouble, and if it does, I’ll have to take it down. But this is hands down one of the best explanations of disability I’ve ever read in my entire life. It was written by a girl dealing with lupus, but it’s extremely applicable to most other physical conditions of which I am aware. I’m kind of hoping that this lovely young woman will be inspired to write a monologue for me, but since I don’t exactly see that as being in the cards, go to her website here and support what she’s doing. But for now ladies and gentlemen I give you my favorite explanation of living physical disability, spoon theory.

The Spoon Theory

by Christine Miserandino http://www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy…

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